I have read a lot on the board about possible autoimmunity being the culprit with BFS. I found this very interesting interview with a Russsian neurologist and Dr. Mercola. They suggest the majority of autoimmunity has to do with the gut flora. They say that we need to begin eating fermented foods again like our anscestors did. The interview is long but worth listening to. So, all I have to say is pass the sauerkraut! http://articles.mercola.com/sites/artic ... -gaps.aspx

" If you got a cold, that virus (many viruses target your nervous system) will go directly to those toxic patches in your brain and your nervous system and attack them. It will start gobbling it up... Of course, your immune system then joins in, trying to attack the virus. It joins in with inflammation, and you [begin to experience] symptoms of multiple sclerosis. You will get tingling. You will get numbness in your face or in your extremities. You might start wetting your bed, or you might get peripheral loss of vision for a while... That’s one of the first symptoms in multiple sclerosis.

in this situation, if you would just feed your immune system properly and leave the work for the immune system to complete, then these symptoms would last for a month or two, and then they would disappear, because... the virus will gobble up the [toxins] and your immune system will clear out the virus. Your nerves will recover naturally.”

Unfortunately, this is not what happens nowadays. Typically, as soon as people get tingling, numbness, and other symptoms, they rush to the doctor, who will immediately put them on some form of medication, which will typically have a dampening effect on the immune system. As a result, the viruses spread and become even more established, and the disease becomes chronic and permanent. "

Man i wish there were some data backing this theory. It just seems too simple. And you'd think that doctors would know about it. Its sometimes hard to determine if this is just "naturpathic" mumbo jumbo or actual scientifically proven fact.

In fact guts are important part of immune system just because most of foreign substances enter the body from it (except those we breath or those which enter via skin) )) And I would say (maybe becasue I am almost Russian in culture and mothertongue) that fermented food is really good thing. That thing you call sauer...whatever - we make it every wintertime and if mixed with raw sweet onoins and sunflower oil - it is great addition to any heavy meal like steak or so... I mean it is a good way to eat it fresh, not stewed in a classic German way )) Kvas (natural drink made of rye flour and yeast) is another great thing. We still are used to eat a lot of other fermented vegetables like tomatoes, cucmbers and aubergines herer in Ukraine, and that is a great tasty thing too!

Personally I believe gut bacteria and cultivation/control of it will be one of the bigger breakthrough areas in this century. I expect we'll see stool transplants (it sounds gross, but it works) become much more common in the coming decades. However while gut bacteria may and likely is related to autoimmune disorders such as those which involve diabetes, I do not feel they contribute much to our BFS infections. The soul reason being that our symptoms indicate something has crossed the blood-brain barrier, and I don't believe any gut bacteria would be able to do so.

In my case these antibodies were actually discovered, and they are crossing the blood-brain barrier and causing my symptoms either directly or indirectly. Based on the research I have done and the neuroscientists I have spoken with during my ordeal, I feel the likely contributing cause is stress rather than gut bacteria. The reasoning being that it is well documented that when under intense stress, the blood-brain barrier becomes more permeable. For example during the Gulf War, various vaccines were tested in labs in the US and found to be safe, but when given to soldiers overseas they were found to have profound neurological affects (a contribution to 'Gulf War Syndrome')... the hypothesis was that this was caused by stress of combat allowing the vaccines to affect the brain due to high blood-brain barrier permeability. In our case, I think instead of a vaccine we are dealing with a virus. I know many of us, myself included experienced a viral-like illness prior to this starting and also were under a lot of stress. I suspect many of us have antibodies that are yet to be discovered and/or tested for... The good news is that our immune systems may be able to recover, and having a healthy gut flora may ease stress on the immune system and allow it to better react to our underlying illness/infection. I think eating healthy, and perhaps digesting a lot of live cultures such as yogurt, may result in improvements.

skonen wrote:Personally I believe gut bacteria and cultivation/control of it will be one of the bigger breakthrough areas in this century. I expect we'll see stool transplants (it sounds gross, but it works) become much more common in the coming decades. However while gut bacteria may and likely is related to autoimmune disorders such as those which involve diabetes, I do not feel they contribute much to our BFS infections. The soul reason being that our symptoms indicate something has crossed the blood-brain barrier, and I don't believe any gut bacteria would be able to do so.

Keep in mind it has been proven that the gut is the "other brain". Performing many of the same functions as our actual brain. Its no coincidence they're both similar in shape and appearance, and in white matter tissue either. Not to mention myself and many others here have a direct increase in symptoms when our Gut is affected. I know for a fact that I do. When i wake up in the morning I get that morning anxiety and the spasms kick in immediately as that begins. I can feel the butterflies and from that point forward, its on. Many people here report food directly affects their symptoms, and I have done numerous tests with my own body confirming this. So I do believe our Gut is directly involved, if not the only thing involved. If our brain was affected, our MRI's shouldn't be looking 100% pristine. Where do you think stress is experienced most? The gut. Where do you physically feel it? The gut. Instant chemical changes there cause everything from gas, to bfs symptoms.

skonen wrote:Personally I believe gut bacteria and cultivation/control of it will be one of the bigger breakthrough areas in this century. I expect we'll see stool transplants (it sounds gross, but it works) become much more common in the coming decades. However while gut bacteria may and likely is related to autoimmune disorders such as those which involve diabetes, I do not feel they contribute much to our BFS infections. The soul reason being that our symptoms indicate something has crossed the blood-brain barrier, and I don't believe any gut bacteria would be able to do so.

Keep in mind it has been proven that the gut is the "other brain". Performing many of the same functions as our actual brain. Its no coincidence they're both similar in shape and appearance, and in white matter tissue either. Not to mention myself and many others here have a direct increase in symptoms when our Gut is affected. I know for a fact that I do. When i wake up in the morning I get that morning anxiety and the spasms kick in immediately as that begins. I can feel the butterflies and from that point forward, its on. Many people here report food directly affects their symptoms, and I have done numerous tests with my own body confirming this. So I do believe our Gut is directly involved, if not the only thing involved. If our brain was affected, our MRI's shouldn't be looking 100% pristine. Where do you think stress is experienced most? The gut. Where do you physically feel it? The gut. Instant chemical changes there cause everything from gas, to bfs symptoms.

I couldn't agree more. I am seeing a gastroenterologist tomorrow with the hope that I can get *some* insight as to what the hell is going on with me. I think others on this board undoubtably have GI issues contributing to their BFS.

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

I don't think it is a coincidence that many BFS sufferers also suffered with GI disordes like IBS or Chrone's Disease prior to developing BFS. I got IBS in college and suffered with it for years before BFS came along. There are treatments to cure GI disorders but they don't come from a prescription pad. More and more doctors are coming out with info that ties the gut and autoimmune disorders together and I'm glad. Good info and thanks for sharing.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.

I've had pretty severe bfs for over a year. I twitch all over non stop. I started taking Prilosec about 4 years ago for my pretty intense heartburn. I'm still on Prilosec and have always wondered if Prilosec and my BFS are somehow related. Thoughts?

TwitchingDuck wrote:I've had pretty severe bfs for over a year. I twitch all over non stop. I started taking Prilosec about 4 years ago for my pretty intense heartburn. I'm still on Prilosec and have always wondered if Prilosec and my BFS are somehow related. Thoughts?

I think Matt's BFS started from Prilosec. You might want to talk to him.

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

TwitchingDuck wrote:I've had pretty severe bfs for over a year. I twitch all over non stop. I started taking Prilosec about 4 years ago for my pretty intense heartburn. I'm still on Prilosec and have always wondered if Prilosec and my BFS are somehow related. Thoughts?

I used to have really bad acid reflux about 10 years ago and I did take prilosec and nexium. Both did work, however they were just masking the problem. Usually the problem with acid reflux is that you do not have enough good bacteria in your intestines and everything just backs up. Kind of like trying to flush a toilet when the main sewer line is clogged at the street. All the crap starts coming out of the toilet onto the bathroom floor. Sorry about the gross analogy, but it is true. I took the meds for a few years and finally ended up taking probiotic pills (good bacteria), which helped relieve my reflux and helped me to be more regular. However, I believe that home made fermented foods may prove even more powerful than a probiotic supplement and they are cheap and easy to make. http://www.youtube.com/watch?v=6gObQR5Vm4M Also, I noticed that certain foods increase reflux with me. Tomato sauce and millet are the 2 worst culprits that give me reflux. My wife made millet one time and I ate the bowl up and told her how great it tasted. Well, 15 minutes later it felt like I was breathing fire. So, we also need to figure out which foods our bodies don't like, which is different for everyone.

ag2002 wrote:I have read a lot on the board about possible autoimmunity being the culprit with BFS. I found this very interesting interview with a Russsian neurologist and Dr. Mercola. They suggest the majority of autoimmunity has to do with the gut flora. They say that we need to begin eating fermented foods again like our anscestors did. The interview is long but worth listening to. So, all I have to say is pass the sauerkraut! http://articles.mercola.com/sites/artic ... -gaps.aspx

Sounds like a lot of Quakery to me! You might want to refer to this link before you going down the gut flora route..

Maybe not quackery entirely. Celiac disease is considered autoimmune. The immune system attacks the small intestine absorption structures when foods containing Gluten are ingested. So here is an example of autoimmunity triggered by a certain type of food intake. Temporary autoimmunity. Though if you repeat, repeat, repeat, you can cause ongoing issues with inability to absorb nutrients which can cause nerve damage, etc. There's some truth / much truth to the food intake and immune / nervous system world. Strong ties. Just a little blurry as of yet.